217071 Telephone and in-person disclosure of genetic test results: 6-week recall, comprehension, and distress among participants in the REVEAL Study

Sunday, November 7, 2010

Kurt D. Christensen, MPH , Department of Health Behavior and Health Education, University of Michigan, Ann Arbor, MI
J. Scott Roberts, PhD , Department of Health Behavior and Health Education, University of Michigan, Ann Arbor, MI
Wendy Uhlmann, MS, CGC , Departments of Internal Medicine & Human Genetics, University of Michigan, Ann Arbor, MI
Peter Whitehouse , Case Western Reserve University, Cleveland, OH
Thomas Obisesan, MD , Department of Medicine, Howard University, Washington, DC
L. Adrienne Cupples, PhD , Departments of Biostatistics & Epidemiology, Boston University School of Public Health, Boston, MA
Robert C. Green , Schools of Medicine and Public Health, Boston University, Boston, MA
Background: Given limitations in healthcare providers' abilities to see patients in clinic, alternative mechanisms are needed for disclosing genetic test information. The REVEAL Study is an NIH-funded, multi-center clinical trial examining the impact of APOE genetic testing for Alzheimer's disease (AD) risk. The third round of the study compared telephone disclosure against in-person disclosure on measures of information recall, comprehension and post-test distress.

Methods: 257 participants were randomized to be disclosed AD risk information from a genetic counselor either via telephone or in person. Estimates were based on APOE genotype, family history, ethnicity and gender (risk range: 6%-70%; mean: 29%). Six weeks after disclosure, recall and comprehension of information provided during disclosure were measured. Test-specific distress was also measured using the Impact of Events Scale (IES).

Results: Most participants correctly recalled whether they carried an AD risk-increasing allele (82%) and their genotype (73%); and understood which allele increased risk for AD (69%). Most participants (86%) also recalled their lifetime risk estimates within 5 points. IES scores averaged well below clinical cutoffs for concern (mean: 2.5). Neither chi-square analyses of recall and understanding nor multiple regression analysis of distress scores showed differences between the telephone and in-person disclosure arms.

Conclusions: Telephone disclosure was as effective and safe as in-person disclosure on 6-week measures of recall, comprehension and distress. Further analyses are underway to assess the impact of telephone disclosure on provider burden, patient satisfaction, and behavioral responses.

Learning Areas:
Administer health education strategies, interventions and programs
Communication and informatics
Planning of health education strategies, interventions, and programs

Learning Objectives:
To understand how telephone disclosure of genetic susceptibility information affects the ability of consumers to recall and understand results, compared to in-person disclosure

Keywords: Genetics, Risk Communication

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a PhD candidate in health behavior and health education focusing on the impact of genetic susceptibility testing and have been the site coordinator of the REVEAL Study for three years.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.